Sunday, December 4, 2016

Another Country

Breathing room

Over and over again, I find that extricating myself from a nearsighted focus on my own life, preoccupations with illness, politics or family problems, gives me space to let go and breathe in other possibilities.  With a little distance from daily pain, I can re-orient, think about the world around me and make room to appreciate people, ideas, nature and more.  

This sort of opening up is a huge relief.  Ultimately I can then come back home, so to speak, allow myself to imagine other outcomes and better understand what my own next step might be.

Here are some of the things that give me breathing room.

Mary and Ray

Two times a week I tutor English to an immigrant couple from another land.  No matter my emotional state when I arrive at Faith Lutheran Church where we meet, I leave feeling as if I'm on a new planet. Mary cooks for a living, putting in long hours behind a hot grill.  She has no vacation or sick leave and no health insurance.  Ray works long hours, six days a week, 10 hours a day, for a landscaping company.  Sometimes he puts in an 18 to 20 hour shift if his crew has to go east of the mountains to lay down gravel or beauty bark or drive 3 miles south to spread salt on the roads in winter.  They'd like to have kids, but that just hasn't happened.  They go dancing almost every Sat. night and fishing during season.  They like to go on walks, and they are enchanted by a new kitten in their lives.  Confirmation, first communion and baptism of friends' children are important events.  They have a rich life.  Since conversation practice is an important part of my teaching and their learning, we chat a lot.  Every week I learn new things about their triumphs and troubles.  I leave our sessions feeling lighter.  My head has somehow joined my heart to dwell in a place where gravity is not so heavy.


Phil

We have a Native American friend, a Navajo man, who was born and raised in Canyon de Chelly, Arizona, under the toughest conditions.  He is a good-hearted soul, who continues to make his gentle way in life in spite of perpetually difficult circumstances.  Phil spent eight years in Federal prison, which he says was time well spent.  He tells me he learned many skills there.  Released 15 years ago, living a productive life ever since, he still can't find a place to rent without someone else - with no felony conviction - to sign the lease.  Yet he is infallibly cheerful.  He does hard physical labor in spite of numerous old injuries.  He says it helps him keep the demons at bay.  He has taught me to let go of my judgments, expectations and opinions about who he is and how he should be doing things.  When he comes around for a cup of coffee, I enjoy his company and the opportunity to accept life just as it is.  One day, after a Phil visitation, my husband shook his head, smiled and said, "Another country."


Travel

When I hit the road (or airport) en route to a different place, something in me relaxes.  I am able to turn my attention away from myself and my pain and travel to a place of forgotten dreams.  The cosmos inexplicably shifts, and I open my hands and my heart and let go.  My shoulders relax and drop down from my ears.  My eyes open a little wider as my habitual routine falls away.  I drink in the sights and sounds with a new curiosity.


Languages

I love listening to the sounds of different languages, even when I don't understand the words.  I am transported by the songs and rhythms of Mercedes Sosa's music.  When I speak Spanish, I become a different person, more open to my own mistakes, more willing to try and sometimes fail without blaming myself.  I take on the heart and soul of a people who feel and see through a different lens.  Continuing to learn and to speak Spanish is an intellectual challenge I love but it also opens doors for me to trust and communicate from my heart.

Children

There's nothing like a child to open your eyes to a parallel universe and give you the opportunity to make a small difference.  This afternoon my six-year-old grandson, Liam, and I went on a little excursion.  Here's a short action-adventure story packed into less than 2 hours.

The coins were in a piggy bank left behind a few years ago by my now 35-year-old son.  For years after he left home to sail off into the sunset on a long list of ships, he returned for a month or three from some far distant port and dumped all of his left-over pocket change into his piggy bank.  Before leaving home today, Liam and I emptied the contents into a bowl and sorted out all the foreign coins from Polynesia, Canada, France, Indonesia, Australia and elsewhere.  We arrived at the credit union only to realize it was Veterans' Day, and of course it was closed.

What do you do when plans go south?  Make another plan.  So we strolled down the street toward the donut shop with a detour to the ceramics store, where you can choose, paint and glaze your own cup, cow or critter.  Liam thought the ceramics store was a boring idea, but after a discerning look at all the options and a break-it-it's-yours discussion, we decided to return and try this out another day.  Shortly afterwards, with a donut under our belts, we headed for home.

Our route took us past an impromptu homeless encampment.  I explained to Liam that these people had no houses to go home to at night.  The rest of the way home we discussed what it meant to be poor and why not everyone could sleep in their own bed, get a job, save money for a place to live and more.  In the end Liam said, "At night, in bed, sometimes I think about stealing money from rich people to give to poor people."  "Sometimes I think that too," I replied, "but stealing from anyone, no matter who, is not a good thing to do."  I later learned they were reading Robin Hood in kindergarten.  Liam was pondering a local application.







Tuesday, November 8, 2016

Not Guilty

Comparing myself

I sit in my brown swivel chair in the kitchen, with a headache, day 3 in a row after a couple of busy, people-intensive days earlier in the week.  I feel listless and blank as I finally give in to the overwhelming desire to take a serious break.

What I also feel is guilt and shame that I'm not being productive.  An invisible imp riding on my shoulder mutters in my ear, admonishing me for being a slacker.  My husband, Jack, is in his office working, filling a book order.  My brother-in-law is outside digging post holes for a new fence across our front yard.  My pal Sally is prepping for her evening class at the community college where I too used to teach.  By this time in the morning, my friend Alice is working at her computer, doing medical transcription.  Lynn is already downtown pouring over new bike-route plans in her city office.  Doug is either cleaning roofs and gutters or pecking away on the rough draft of his next geology book.

I can't compete, much as I want to.  Yet I can't seem to let it go and realize it's a mugs game, this perpetual hamster wheel of measuring myself against everyone else.  I've already chosen the winners and, coming up short, designated myself the looser.

Imp

Shame

Neither my family nor my friends pressure me to work or play, but I do.  I often feel I'm not doing my share, not making a big enough contribution.  The list goes on to include not only work but play.  I'm not traveling as much as Maria or doing as much art as Janey.  I'm not busy enough, and in our culture being busy is a sign of status and worth.  Pain rendering me unable to be busy, I am humiliated by my regrettable weakness.  

Like many who are ill or afflicted, I am plagued by the sense that my headaches are somehow my fault.  I am dogged by the notion that my constant pain, fatigue and anxiety are my own doing, my karma, that there is something, at the core, fundamentally wrong with me - and it's not just migraines.  The difficulty is that I have no idea what transgression I have committed to deserve this punishment.

Now, I'm aware that this is magical thinking gone badly awry.  When this theme begins to play its discordant tune, I call on four friends of mine for assistance:  Karen, Jill, Robin and Carol.  All fantastic women, they are sadly deceased, three from cancer, one from suicide.  They did nothing wrong, possessed no fatal moral or ethical flaws.  In fact, they took good care of their families and their community, and all were involved in important work.  It's not fair, nor was it deserved, but they all suffered and died fairly young.  When I begin to drag myself down, I remember my friends and send out a little plea for support.  They always answer.

Peace

I'm tired.  Exhausted really.  Some days, some weeks I am able to keep going in spite of daily pain, but then I hit a wall.  I can no longer deny my body the rest it is crying for, and I surrender.  

Jack leaves, and the house turns quiet.  The clock above the kitchen window ticks softly and there's the faint sound of Kathy's radio downstairs.  I hear the refrigerator kick in as I sit before a fire in the wood stove.  It's November.  We're well into the fall season, and the days and nights have turned chilly.  Suddenly I'm relieved.  It's just me, and for the moment, unobserved, I can do and be any way I want to.  A sense of calm and relief washes over me.

I began to have greater insight into my struggle with guilt and shame on a solo trip to Zihuatanejo, Mexico three or four years ago.  

The night I arrive, I awake from sleep at 3:00 am to rain thundering on roof tiles and cascading down onto my balcony.  Rainy season.  The next morning clouds pile up on the horizon out at sea, and it rains intermittently throughout the day.  It is hot and muggy, so I am inclined to spend more time than usual in my air conditioned room with a view.  With no one around to observe me, I fall into a soothing routine.  Tea and breakfast on the balcony of my room.  A second cup of tea as I watch the fishing fleet navigate out of the bay, gather around the rocks at the mouth and then steer their pangas out into the open ocean.  I watch, mesmerized, as the spring swell moves in endless waves across the bay, crashing on the beach below my hotel.  My feeling is relief, peace, gratitude and total acceptance of the slow rhythm of my day.
                                                                                                                                         
It is a revelation.  Removed from my home, friends, family and routine, I am able to leave guilt and shame behind.  Untethered from my usual ties and responsibilities, I need only consult myself.  Headaches and all, I become a free woman. 







Sunday, October 30, 2016

Migraine Linked to Abuse

Something we never talk about

Abuse is common and occurs worldwide.  It can be physical, emotional or sexual, and it also includes neglect.  There is a strong association between a history of childhood maltreatment on the one hand and migraine and other chronic pain disorders on the other.  This article by researcher Gretchen Tietjen is a good summary of the issue.  http://www.medicaldaily.com/emotional-abuse-childhood-migraines-391660

It is documented and accepted within the community of headache sufferers and specialists that migraine runs in the family.  There is a strong genetic association.  In addition there is now a theory that migraine may be epigenetic.  This means that environmental factors such as early stress and abuse may alter your DNA and that the effects are hereditary.

Scared
Presumably, If you have a genetic history of migraine in your family as well as possible epigenetic factors in your background, you are doubly threatened, but the research on how all these issues fit together is in its infancy.  The belief is that genetics may play a part, but the expression of that hereditary pattern gets turned on or intensified by the addition of environmental stressors.

Psychological therapies, including Cognitive Behavioral Therapy (CBT) and EMDR or Eye Movement Desensitization and Reprocessing are among the approaches that produce some success in defusing traumatic experiences.  Anti-seizure medications valproate and topiramate are FDA approved for treatment (prevention) of migraine.  These drugs are also known to reduce the effects of stress-induced, epigenetic influences and thus may be good choices for pharmacological treatment although they were not effective for me.

While there are researchers like Dr. Gretchen Tietjen documenting the relationship between migraine and abuse, I have found little research-based information on the efficacy of these different treatments, whether medication-based or psychological.

We tend not to address this issue in migraine blogs, and we don't discuss it much on other migraine-related, social media sites.  There is no mention of the link between childhood maltreatment and migraine on the websites of the National Headache Foundation, the National Migraine Association (MAGNUM) nor the American Headache and Migraine Association.  Your physician, even if he or she is a headache specialist, will probably not bring it up.  In my opinion, this is a big hole in our collective conversation about the disorder.
The only photo I can find of all of us together

My family and me

In an attempt to get the conversation going, I'll share a little of my own story. I come from a nuclear family of four: mother, father and older sister.  There was no history of alcoholism, sexual or physical abuse nor of physical neglect.  On the other hand, there was a great deal of scary anger floating around our household.  There was serious stress related in part to my father's illness.  He was diagnosed with multiple sclerosis the year I was born.  While there are a lot of holes in my memory, I remember that my parents fought or argued incessantly.  My dad was the strong, silent type who was more inclined to shut down or leave when things got tense, while my mother's louder anger spilled over and sucked the air out of the house.  My father was in and out of hospitals throughout my childhood even as he continued to work as a civil engineer in the oil fields of California.  My mother had phlebitis and deep-vein thrombosis with a history of multiple surgeries and a near-death event when a clot broke loose and passed through her heart and lungs.

My relationship with my mother was forever difficult.  She was controlling and critical and angry.  I think that became worse over the years as my father's disease progressed and she felt trapped by the circumstances.  While I don't really trust my memory to sort all this out, there is no doubt I was afraid of her.  Perceiving no other way to fight back, I shut down and retaliated with silence, which fueled her anger but gave me some sense of control.  This habitual restraint no doubt cost me as I grew older and had difficulty expressing my own anger, vulnerability and even joy.

As my sister grew into adolescence, she began to express her anger verbally and with lots of door slamming.  As she grew older, she was charming, extroverted and very articulate.  As I began to grow up, I became more introverted and careful to avoid doing or saying anything that might upset the family apple cart.  Sometimes I was the object of my sister's anger and passion.  Six years her junior, I felt powerless and scared.

I have no idea whether or how much my family history has contributed to my headaches.  And among the many questions that remain for me is, "So what?"  Many of us come from an endless variety of difficult childhood circumstances.  Once you recognize that perhaps your early upbringing was less than salubrious, you can begin to learn and choose better ways of living with yourself and others.  Nonetheless, your early history remains and sometimes reinforces genetic predispositions.  While we are constantly learning new ways to help those who have experienced recent, trauma-induced pain and disability, there has been less success with the physical fallout of decades-old, poorly-remembered events and patterns of family disruption.

Over the years I have learned to be more expressive of my feelings and more open to myself and others.  I can identify and clarify thoughts and emotions as they arise.  While these are valuable skills, my headaches persist.  I have a mental health therapist I see regularly, and I continue to explore all avenues that my one day help reduce or eliminate my headaches.

Friday, October 21, 2016

Chronic Migraine is Boring

Retreat

It's 6:00 am when my head prods me awake with a burning pain at the top of my skull.  I roll out of bed and make it to the bathroom, the only stop on my way to a prolonged sequestration in my bolt hole.  Sometimes I can tolerate a cup of black tea but not now.  This morning all I can do is retreat to my futon, lie on my side with an ice pack on the opposite temple, breathe into the pain and hope my abortive meds don't come retching back up before they've had a chance to take effect. This being one of my bad days, I vaporize cannabis, which settles my stomach, helps me relax and maintain some distance from the pain. Thanks to the cannabis, I drift off to sleep for a couple of hours. The day wears slowly on until, almost imperceptibly, the pain begins to ebb around 3 or 4 pm.

Boredom

My plan was not, never is, to spend the day buried under pain.  While the pain is acute, I'm either breathing into it, trying to relax and put a little distance between myself and the hurt or, thankfully, asleep.  I may be downhearted that I'm back at it, but I'm not bored.  As the pain eases, boredom sets in.  I can't get up yet, can't eat, can't read, can't tolerate music nor any auditory input.  So I wait as this tedious day slowly wears on.

The Merriam Webster dictionary defines boredom as the state of being weary and restless through lack of interest.  That's not quite it.  I have no lack of interest in a multitude of things, but pain, along with the host of neurological symptoms associated with migraine, very often leaves me adrift, unable to muster focus or energy.  I am caught in a sticky web of tedium, trapped like a fly in a spider web.

There is another difficult aspect to this struggle, an ominous sense that time is running out, that my tiresome days languishing on the futon are stolen from the finite number I have left.  And that I am, perversely, wasting them.

spider web

Antidote

How do we cope, or better yet, what can we learn from this common reaction to illness.

Patience is a homely, old-fashioned virtue, out of style in our frenetic, techno world.  But it is a soulful attitude.  Related to fortitude, grit and tolerance, it can smooth over the rough passages.  The question remains, how do you or I move from impatience to patience in the face of such difficult circumstances?

Witnessing and naming are good tools to acquire.  I try first to step outside of my discomfort for a moment to recognize that I'm struggling, not just physically but emotionally.  Then I put a name to my pain:  impatience, fear, anger, self blame.

Compassion is the next step.  I allow as how anyone would feel this way under the circumstances, and it's ok, a normal reaction.  Sometimes I pair this attitude of permission with a comforting physical gesture like running my hands across my temples, over my forehead and through my hair in a little scalp massage.  I also have a private term of endearment.  Speaking silently to myself as if it were my mother, husband or best friend, I say, "Look, Sweat pea, you're good.  This is all going to pass.  Nothing stays the same."

Breathing deeply into my belly and letting the tension in my shoulders go helps extract me from the grind of thoughts ferreting around my brain and calms me, at least for the moment.

Curiosity is the act of wondering.  What about this or that?  What if............there were something I could do to help myself feel better?  It requires an openness to possibilities large and small.  In a small experiment yesterday, I hung a mirror at the foot of my futon.  Now I can lie there and see the sky and trees reflected from the window above my head.  I can watch the leaves move in the breeze and notice the birds and insects flit across my visual field, see the sun glint off a long spider web.  I feel a little less hemmed in.

Focus on one thing.  In her book, "How to Be Sick," Toni Bernhard reminds those of us with chronic illness to stick to one thing at a time, no multitasking.  Eventually, a day or two after a migraine, I surface and begin to reapply myself to life left behind.  Once I'm feeling better, the temptation is to try making up for lost time, cram into the day all the things that didn't get done when I was down and out.  This kind of frantic, over-doing-it tends to make us sicker.  So the trick is...........take it easy, choose your focus, one step at a time.  If this sounds a lot like AA (Alcoholics Anonymous), there's a reason.  The more pressure you put on yourself, the more likely you are to slide down the slippery slope into pain and then, perhaps self recrimination.  So let that steam off the pressure cooker, relax when you can and enjoy whatever one thing you have chosen to do at this moment on this day.

 

Saturday, October 8, 2016

Alternative Treatments

Have you tried.........?

Somewhere on the long, winding road we travel seeking a remedy for our migraine pain, most of us resort to so-called alternative treatments.  We tend to pigeonhole curatives such as acupuncture, rolfing, homeopathy and cannabis as "out there," unproven, therefore worth less than the pills and surgeries prescribed by our doctors.  Yet we all have much to learn from the health and spiritual practices that come to us from the East and elsewhere around the globe:  acupuncture, Tai chi and Qigong from China, Buddhist spiritual practices from Japan and Tibet, ayurveda and yoga from India, Native American healing from throughout the Americas, and more.

Every individual's migraines are different, and the cause of migraine continues to be poorly understood.  I believe it is not only sensible to explore all avenues to improve your health but imperative to stay open to trying new treatments, new doctors, spiritual practices and life style choices.  That said, whether you're choosing among physicians or therapeutic traditions, my advice is, "Go slow, do your homework, don't overlap new trials of treatment, give it time and, finally, keep careful track of your body's response."

I have tried all of the following over the long years of living with migraine:

•  Acupuncture
•  Psychotherapy
•  Chiropractic
•  Naturopathy
•  Homeopathy
•  Aroma therapy
•  Cranial sacral therapy
•  Massage
•  Rolfing
•  Herbs and supplements
•  Cannabis
•  Diet, nutritionist
•  Oxygen
•  Neurofeedback
•  Music
•  Meditation
•  Yoga
•  Tai chi, Qigong
•  Shamanism
•  Clairvoyant

None of these approaches cured my headaches, but some have given me worthwhile relief from other ailments and helped my body and mind feel a little better, more centered and at peace.

Acupuncture has given me relief from carpal tunnel syndrome and digestive problems.  However acupuncture needles in my head or face will trigger a migraine, so I no longer allow placement of needles in those areas.
My naturopath has helped me with everything from yeast and urinary infections to gut problems and written a prescription for cannabis to treat pain.  He is my first stop for ordinary health problems and anything related to diet.  His treatments are often effective and less likely to cause side effects than many medications prescribed by my family practitioner.
Psychotherapy has helped me cope emotionally with chronic pain, giving me an outlet and resources to express my fear, grief, despair, anger and hope.  It reminds me to stay open to possibilities and remember that anything can happen.
Massage        When I'm at a low point of constant headaches, massage has lead me to appreciate my body as a source of comfort, not just pain.  However, I have learned not to let my masseuse dig too deeply into that sensitive area underneath my occiput, which can trigger a migraine.
Hemi-sync is a system of music enhanced with binaural beats to promote brainwave synchronization.  It aids relaxation and rest when I'm tired, over stimulated and frazzled.
Meditation calms me, lowers anxiety and takes the pain down a notch.
Yoga, likewise, helps me keep a sense of strength, flexibility and balance in my life, both physically and spiritually.  I neither meditate nor do yoga as regularly as I should, but both are there for me when I remember and determine to devote myself once again to regular practice.
Cannabis has been a huge deal for me.  When my headaches were at their worst and most frequent, it gave me great comfort to know there was something I could turn to for pain relief that didn't cause intolerable side effects.  I live in a state that has legalized marijuana for both medical and now recreational purposes.  I vaporize it in loose flower or bud form when I have a severe migraine.  It reduces or eliminates the pain and anxiety and allows me to sleep.  I have never used it for mild pain because I don't like feeling sedated or less than alert during my waking hours, no matter what the drug.  I also vaporize it in the form of a vape pen as a sleep aid.

Neurofeedback is a form of biofeedback that uses EEG or electroencephalography to promote subconscious self-regulation of brain function.  Sensors are placed on the scalp and ears to measure output (brain activity) and provide input to the client in the form of video displays or sound (music).  The video or sound supplies positive feedback for desirable brain activity or negative feedback for undesirable patterns.  Evidence-based studies are beginning to support use of neurofeedback in treatment of ADHD.  There are indications that it helps in treatment of alcoholism and opioid dependence, seizures, autism, depression, insomnia, stroke, PTSD, migraine and more.  I am now into my fourth week of neurofeedback, so the jury is still out.  An average of 10 to 20 treatment sessions are usually required to alter symptoms.  There is, of course, no guarantee neurofeedback will decrease the frequency or severity of my migraines.  But there is no sure outcome no matter what the therapy.  I have dutifully tried every preventative medication prescribed by my excellent physician, who is a headache specialist.  Only two resulted in measurable improvement in my headaches, and all came with increasingly difficult or intolerable side effects.  The efficacy of those 2 medications decreased over time and eventually diminished to zero.

Biofeedback is a mainstream approach to headache prevention.  While it did not help my headaches, it was and is a powerful tool for me in other respects.  I learned to use progressive muscular relaxation techniques, which later helped in meditation.  It also gave me significant control over a difficult gut problem, the urgency to have a bowel movement, sometimes when no bathroom was available.

Integrative medicine

We are at the beginning of an era when alternative health care approaches and western medicine are slowly coming together in the new field of integrative medicine.  https://nccih.nih.gov/health/integrative-health
As this process develops, we will begin to understand new and different ways to deal with old problems, and patients will no longer be stuck in the middle, forced to choose.





Wednesday, September 28, 2016

Hypersensitivity

We are 10 min. north of Santa Cruz, California, on a magnificent stretch of Hwy 1, heading toward San Francisco on our way home to Washington State.  Looking out to sea, I spot a blue black slice slipping under the off-shore wind waves followed by the unmistakable blow of a second whale.  I feel a moment of supreme satisfaction.  Even though I didn't get my whale watching tour, I got my own wild sighting.

My husband and I had an opportunity to go whale watching.  It would have been a fantastic thrill to be out on the ocean with a knowledgable pro boat guy in a very large inflatable, but I knew that my head and neck would never tolerate the pounding of a small boat in the open ocean accompanied by a voluble monologue from her story-telling captain.

This last week visiting my son and daughter-in-law has been lovely.  They have accommodated us in every way possible way, putting us up, cooking, entertaining us and hanging out yakking around the back-yard fire pit as we watch a possum and then a skunk amble down the fence line a few feet away.  Still, 9 days away from home, and my headaches have begun to amp up.  I awake almost every morning in pain, which I keep at bay with abortive and pain medication and my electro-magnetic device, the SpringTMS.

On Wed., the afternoon before we plan to head home, a friend shows up a couple of hours before dinner.  I am dozing, contented, in the back-yard hammock, the sun warm and relaxing.  A rope tethered to the fence allows me to give myself a swing now and then.  I stay put as the shadows creep over me and then wander indoors to meet the new guy.  Jake hangs around for dinner and conversation until 8 or 9 pm.  My head is buzzing, circuits fried by the end of the evening and, consequently, I am in no way ready to leave in the morning.  I need our last evening to be just us and Andrew and Jenny.  We end up stretching our stay out one more day.
 
My nervous system is super sensitive.  Among the many sources of upset for me are people, noise and high-energy conversation, even with family and friends I love.  I can tolerate short shots of intense interaction, but if it goes on for too long without breaks and space in-between, my comfort level drops, and I begin to feel overwhelmed.  I experience a sort of mind-body split, caught between competing desires.  Even as I desperately want to participate, my body longs for a break, a quiet spell lying down, away from it all.

Caught


Trigger

Like nearly all people who suffer from severe migraine, I am hypersensitive to a wide variety of stimuli including the following:
  • Changes in routine, medication and weather
  • Traveling
  • Noise
  • Flashing or flickering light, eye exams
  • Dental procedures 
  • Too many people for too long
  • Emotional stress
  • Anxiety
  • Not enough space or time between activities
  • Fatigue
  • Smells including cigarettes, gasoline fumes, wood smoke, nail parlors and more
  • Alcohol
  • Late or missed meals
  • Illness or infection 
  • Heat
  • Intense movies especially on a large screen, Imax or 3D
  • Too much computer or TV time
  • Acupuncture needles in my head
  • Neck massage in the occipital area
Any of the above may tip me over the edge and trigger a migraine or, eventually, a spike in frequency.


Prodrome

Conversely, hypersensitivity in other forms may herald the onset of a headache, not the cause but a warning or prodrome. If I tune in to these feelings as they arise, I can sometimes prevent the actual headache using the SpringTMS.  These include:
  • Anxiety
  • Depression
  • Irritability
  • Euphoria
  • Fatigue
  • Mental cloudiness
  • Lack of focus or motivation
  • Short-term memory problems
  • Super-sensitivity to a variety of stimuli
  • Muscle spasms in my neck, shoulders, back
  • Earache


Aura and headache

Once or twice a month, I experience a classic visual aura, a half-moon, zig-zag pattern of scintillating light.  While I can't avoid the aura, I can sometimes abort the headache with the SpringTMS.

During the actual headache, pain is often accompanied by nausea and sensitivity to many of the same basket full of irritants that trigger my headaches.


Postdrome

After my headaches wind down, I am left feeling limp and spaced out.  I am mentally hungover, stale, lethargic and fretful at my inability to apply myself.  My concentration is poor, my mood often low, my nerve endings still buzzing with irritation to noise, lights and action.


Real Time

What this all means is not suffering one day sick in bed but three days enduring a host of disturbing sensitivities and symptoms.  Having an episodic or occasional migraine is painful but not too disruptive to your quality of life.  Having chronic migraine, that is 15 or more days per month, is profoundly difficult and destructive.  One headache with all associated symptoms bleeds into the next leaving scant time to recover my equilibrium and energy.  Coping is a constant seesaw between succumbing to the pain and pushing myself to keep moving.

This headache begins Thurs. with fatigue and lethargy.  My two-year old grandson, Lucas, arrives at 9:00 am.  We play with magnets and play dough, pick late-summer grapes from the arbor and take a short walk before lunch and then, thankfully, a midday nap.  Afternoon requires a 30 minute drive to a physical therapy appointment, but the trip home is tough.  Driving with less than full concentration is a poor idea, but more than I would like, I find myself behind the wheel when I would be better off prone.  What do you do when you are symptomatic roughly half your waking hours and still want and need to function?  Practically, the answer is....... the best you can, which is not optimal.  

Friday, I awake with a headache, not a crashing, 5-star misery but medium-grade head pain and a churning gut.  I pop a naratriptan when I get up, swill two cups of black tea and, foolishly it turns out, eat my usual bowl of steel-cut oats for breakfast in hopes this will all go away and I can carry on.  By 10:00 am my gut is churning.  In a valiant attempt to keep going, I hop on my bike and take a short ride to the neighborhood coffee shop for a chat with my friend, Stephanie.  I am happy to see her, but my attention is split between talk of our sons, writing and politics on the one hand and my roiling stomach on the other.  By the time I return home, I'm feeling better so I make myself a taco for lunch, another mistake.  My belly in revolt again, I head out for a scheduled hair cut.  By the time I get home, I'm done for.  More than ready to give up and give in to my fatigue and nausea, I head for a nap on the futon and, later, a supper of apple juice, banana and toast.

Today I'm in day-three, recovery mode.  This time I'm not doing too badly, concentrating well enough to write, eating a bland diet, enjoying a fine fall day as I look out the window at leaves beginning to turn color on the vine maples, apples ripening on my semi-dwarf tree, clouds beginning to clear to the southwest.  But I'm still in slow mo.  The challenge will be not to overdo it and set my sensitive nervous system up for yet another migraine tomorrow.



Monday, August 8, 2016

Staccato

Disconnected

I live my life in staccato, each day discrete and disconnected from the last, separated by episodes of head pain and nausea. Thinking, the other day, about this particular piece of my struggle with migraine, a memory came to mind - of a zoetrope, a 19th century optical toy my husband built years ago for our kids. It consists of a cylinder with vertical slits and a series or strip of individual pictures drawn on the inside. Looking on from the outside, when you spin the cylinder at just the right speed, the serial images run together appearing as figures in continuous motion. But the real truth? Slow down or interrupt the motion of the cylinder and the action reverts to disconnected, individual images.

Interrupted

Now, as I sit here writing, after a few morning hours of productive, concentrated work, I suddenly become aware of my right neck and shoulder beginning to knot into a tight muscle spasm.  I stop what I'm doing to check in with myself, a body scan to see how my individual parts are fitting together.  I feel a kind of density on the right side of my face and a tiny throb in my temple.

I stop writing mid flow and get up to treat myself with the SpringTMS in hopes of preventing an impending migraine.  I check my calendar to see how many pain pills I've taken this week, look at the clock to see when I can take one that will get me through the afternoon and an early evening concert, tickets already bought and paid for with maybe a 50/50 chance that I'll actually be able to go.

It's complicated, living with pain that comes and goes in unpredictable fits and starts.  I am an English tutor, a grandparent who babysits.  I write, draw and paint.  I like to walk and swim, do yoga and travel, go to the movies and meet with friends.  I still do these things but with an impaired sense of rhythm.  I cope with my splintered life by having a strict order of priorities.

Babysitting and tutoring usually come first because they involve a commitment to other people as well as myself.  In order to pull this off I reserve 2 of my headache abortives and 2 pain pills per week, only 2 because taking more pills risks rebound, which would ultimately lead to even more frequent headaches.  The rest of my routine is subject to frequent cancellations.

Episodic pain has eroded my ability to build on skills and develop interests, leaving me hanging on in frustration instead of making calm choices with the freedom to follow through.  I have a perpetual sense of being unfinished in all things.  Often I have to beg from Peter to pay Paul.  If I push my energy envelope today, tomorrow may see me in bed or on the couch.  I may start a drawing, a weaving or a written piece and have to abandon it for days.  I return to projects disoriented, searching for my original inspiration.  These frequent interruptions undermine the sense of continuity in my days and weeks.

Flow

What if?

But what if I could view my pain breaks differently?  In fact, the most recent suspension of my writing allowed for a different take on things when I returned to work.  Instead of seeing a series of frustrating, interrupted moments, I began to envision water flowing over and around the rocks and snags, but flowing nonetheless, a continuous stream shrinking and swelling, slowing down and speeding up with the seasonal runoff, changing channels during floods but forever moving with its own sense of direction.

While an imperfect solution, this imagery gives me a little distance from the frustration and also reminds me that we all have obstacles of every shape and size, whether it's physical pain, divorce, financial troubles or family problems.  My challenge, ultimately, is to develop a certain acceptance of the obstacles and a respect for my own way of flowing around and through them. 

Wednesday, July 13, 2016

Facing My Fear

And making it to my son's wedding


It's May, and my youngest son's wedding is just around the corner.  Noisy, crowded social events often precede a severe migraine headache, and I'm afraid of ending up in bed, missing one of the most important days in my son's life.

Andrew and Jenny are getting married in Sayulita, Mexico, a destination wedding with 52 guests.  I'm excited and looking forward to the event, but a part of me is already anxious about coping with the physical demands of travel and the social demands of a high-density 5 day party.

I've been doing better lately, but that can change in a heartbeat.  Given the right - or wrong - set of circumstances, I regain consciousness in the wee hours of the morning with a feeling of dread, an ice-pick pain in my temple and nausea gnawing at my gut.

Two days before the wedding, a harsh 3 am alarm wakes us to catch a 5 am flight, which will set us down in Puerto Vallarta after multiple plane changes.  In L.A. I get a text from my son asking about our arrival time.  We coordinate plans to meet up at the airport and share a van ride to Sayulita.  We're looking forward to seeing him and pleased to get a sliver of family time before everyone else arrives.

Mexican customs features a magical red/green button.  We push the button.  A green light, and the customs agent waves us through and out the other side.  Searching the swarm of noisy travelers and hawkers, we find our driver holding a sign with my name.  Fifteen minutes behind us, Andrew, Jenny and family swim through the throng, greet us with hugs, and we all climb in the van.

Forty minutes later we bump down a narrow dirt road in Sayulita and spill out of the car into moist, salty air at beachfront Las Hamacas, our hotel and the site of the festivities to come.  There are 6 tall houses, 3 bedrooms and therefore multiple families in each house.  While most of the guests are arriving tomorrow, some few are already in residence, lying around the pool or wandering paths bordered by palm and banana trees.  We're gratified to be sharing with Ivan, my son's old high-school friend and his young family, who have already settled into our house.  Still, sharing accommodations with others means less privacy, less personal space and more social requirements starting early in the morning and continuing until bedtime.  My easily over-stimulated nervous system needs time to calm down, and I will be getting less of it.

It's already 6:00 pm, the evening of a very long day.  I'm happy we've arrived in this verdant little ex-pat beach town with no major hitches, but I'm tired and need to eat soon.  As we stroll down the beach to find food, my stomach flip flops between hunger and pain.  The fish tacos taste good, but I still have butterflies in my gut.  As the sun sinks into the water, we wander back toward our room to chill out and read. I am edgy and unable to relax into the rhythm of a warm Mexican night. Not even the geckos skittering across our wall and chirping from a hidden crack amuse me as they usually do.

On our first day (and everyday thereafter) I crawl out of sleep early with a dull headache and creeping anxiety. I use my SpringTMS to treat my headache and go back to sleep for a couple of hours. I get up with a dicey stomach and the fear that I may already have contracted a Mexican intestinal bug.

The wedding is tomorrow, so today is open. We take it easy, hang out around the pool greeting newcomers as they roll in from New York, Calif., Arizona, Florida, Washington State and elsewhere. Several come with kids in tow, and by mid afternoon the pool is full of families.  My older son Ben and grandson Liam show up and move into a downstairs bedroom. We are now 5 adults and 3 kids age 5 and under. Lunchtime is a spontaneous group get-together. We sit on benches, digging our toes into the sand at a shady beach restaurant. Later dinner is with Ben and Liam, who is tired and cranky. Things are just getting underway. The group is high on anticipation and shared experiences, but I'm already feeling crowded and overwhelmed.

The next morning is a headachy, intestinal repeat, and i'm convinced the only recourse is to quit eating for 24 hours. I hang out on the patio with Ivan and family and play with the kids while enjoying the tropical birds and trees hanging over our 3rd floor balcony.

At 10 am, Andrew and Jenny and our two families meet on the beachfront lawn for a wedding rehearsal. I'm calm and engaged in the moment, thinking only of the ceremony and those of us involved. The rehearsal is brief and fun. There's a lot of good feeling flowing around. We will gather at 5 pm for appetizers and drinks. The ceremony is at 6.

When everyone takes off for lunch, I stay behind swilling a coco frio to stay hydrated and give myself a little sugar. I'm torn and sad. The quiet is a relief, but as always, I hate being left out. My head and gut calm down, and time to myself brings the dawning recognition that fear is magnifying my symptoms. While I have had migraines since childhood, anxiety entered the picture in recent years when headaches began to occur almost daily. Now, re-evaluating symptoms gives me some options. I increase the dosage of one of my medications. I begin to use some of the tools I learned practicing meditation. I name the emotion. "This is just a feeling of fear." I breathe deep into my belly, consciously following each breath in and out, reinforcing it with visual imagery.

50 chairs and a simple flowered arch on the sandy beach in front of the hotel set the wedding scene. Jenny, in a beautiful short dress, is barefoot. Andrew, in linen pants and a white guayabera, wears flip-flops. Everyone else is beach casual in everything from shorts to cocktail dresses. The ceremony is conducted by friend Pete with vows composed by the couple. The reception is on the lawn next to the beach, the sound of surf singing in the background. A couple rolls cigars; tacos al pastor are sliced from a flaming spindle of pork topped with pineapple; the churro vendor serves up flutted tubes of pastry squeezed from a tube into a deep-fat fryer. Kids frolic, tightrope their way across a short wall separating the lawn from the beach, box with the wedding beer koozies over their small fists and line up to take their blind-folded turn at pummeling the piƱata.

The next 5 days ease into a slow pace of pool gatherings, communal meals and one of the best parts for me, swimming in the ocean. We take a golf-cart spin into town, eat dinner under a tree filled with iguanas and buy a coco frio to take back to Lucy, the 6 year old next door. We watch my grandson take his first dog paddle into the deep end of the pool, sit on the terrace reading comic books and playing checkers with the kids. A little green lizard zips by on a low garden wall. While early-morning, low-grade headaches, anxiety and tummy troubles still plague me, I'm no longer running so scared. I've reached a detente with my body and emotions that carries me through this important family event. I've learned a lesson in facing my fear, respecting it and moving on.

Friday, April 29, 2016

When I'm 64 ..........

Aging and migraine


When I get older losing my hair
Many years from now
Will you still be sending me a valentine, Birthday greetings, bottle of wine?
If I'd been out till quarter to three Would you lock the door?
Will you still need me, will you still feed me
When I'm sixty-four?
                    The Beetles

Now that I'm older plenty of hair
Zero years from NOW
Will you still be sending me a valentine, Birthday greetings, bottle of wine?
If my head is knockin' with terrible pain Will you bring me tea?
Will you still need me, will you still feed me 
When I'm sixty-four?


When I was younger

I have had migraines since childhood, but my headaches really began to ramp up during my child-bearing years.  In my early 30's they began to interfere occasionally with my work as an occupational therapist. The headaches happened infrequently with my first pregnancy, but by the time I was carrying my second baby, they were a persistent problem.  Things improved after my son was born, but the headaches slowly, almost imperceptibly became more frequent and more disruptive to my family and work. They had begun to be real interruptions in the flow of my days.

I can clock my slow, downhill slide over the next few years by the 5 leaves of absence I took to try and get a handle on the persistent pain.  Our basement clinic at the hospital had florescent lighting with no windows to the outside world.  At the end of a 5 or 6 hour day, I usually went home with a headache, which slowly resolved over the next hour or two.
After a few years, I moved on to work in the public schools.  Even though the job was part time, I rarely made it through the day without the onset of a migraine.

I also worked on my off days, evenings, and weekends doing production weaving and teaching weaving and craft classes to adults and children.  When I arrived home in the afternoon, I had two young children of my own to care for.  It was a productive, interesting time but difficult because I was juggling pain and fatigue as well as work and family.  Years later, Jeremiah, a teenage friend of my son, remembered often having to tone it down because I was in the throws of yet another migraine.

In 1991 Imitrex came out as the first designer drug aimed at aborting migraine headaches.  Having failed to respond to any of the preventative medications prescribed, I depended on Imitrex to keep me going for years.

In 2000, I went back to school and got a certificate to teach English as a Second Language. I got a job at the local community college teaching English to immigrants.  It was profoundly satisfying work but a continual struggle to perform well.  After 11 years, I retired early when I began to feel that my headaches were impacting my teaching.  Leaving a job I loved was a blow, but I'm proud that I made it to age 66 before having to 'hang it up.'


Over the years........

I tried and failed to find relief from several major first-line medications including Verapamil, Nortriptyline, Depacote and Topamax.  I also began to have adverse reactions.  Nortriptyline precipitated episodes of tachycardia. Naprosyn caused itching and burning in my hands and feet.  By 1998 or 1999, I was using Imitrex daily. My doctor advised against this and prescribed beta blocker, Atenolol, in hopes of preventing my escalating headaches.  Atenolol tipped me over the edge into a serious depression and required yet more medication.

Over time my specialists prescribed a total of at least 30 medications aimed at preventing migraines.   The results of this chemical barrage were short term or no benefits on the one hand and increasing side effects on the other.  These ranged from the usual including sedation, fatigue, dry mouth, hair loss, nausea, constipation, diarrhea, anxiety and insomnia to the unusual including loss of taste, breast enlargement, inability to do basic mathematics and visual anomalies.


Now that I'm older

The doctors all told me, 'Hey, good news.  When you get older (specifically, when you go through menopause), your headaches will go away.'  Sadly this did not happen.  As I began perimenopause, things really began to go south - and then they got worse.  Proving them wrong was not satisfying.  Actually it pissed me off for a long time.

Doctors want to help, and their answer is usually to prescribe drugs that have a track record with other patients.  While understandable, I have found little acknowledgment in the medical community that things change with age, and more drugs on board may make things worse instead of better.  Now almost 70, I've learned I can tolerate and benefit from some medications at a low dose.  Other drugs make my health and my headaches worse. I've also learned not to rely on doctors to sort this out.

With age, headaches have become more frequent but less painful.  Auras happen more often.  My pre- and post-headache fatigue has increased, and my stamina decreased.  Unreliable short-term memory and word-finding difficulties drive me crazy.  Many of these symptoms are common to migraineurs, but age, in combination with medication, accentuates the problems and makes them harder to tease apart.  And as always, my headaches continue to change.

Now I'm in the process of very slowly weaning myself off low doses of Baclofen, Klonopin, and Remeron.  I still use Naratriptan as an abortive and Fioricet for pain, both about once or twice a week.  Since January, I've been using the Spring TMS device, which is helping to decrease the pain and reduce my reliance on prescription drugs.

I find the more time I spend outside and around the water, the better I feel.  Yoga, meditation, art,  walking and bicycling, time with friends and family all feed my spirit.      


My father's question

The year I was born, my father was diagnosed with multiple sclerosis.  He suffered from fatigue, double vision, numbness in his hands, difficulty walking during exacerbations and, no doubt, other symptoms I was unaware of.  But he continued to work in a demanding career as a civil engineer until his late 50's, share in raising 2 daughters, play golf, do woodworking and, in short, carry on as best he could.

Not long after he retired, when I was a young adult, he asked me if I thought he was a failure.  I was shocked and found his question puzzling and incomprehensible.  I answered, "No, of course not."  But I didn't ask him why.  Now, I think I understand. In the face of debilitating illness, no matter how hard we try, we can't pull off a life not impacted by pain, weakness and fatigue even though we feel, against all odds, we should be able to do better or do more.

I struggle with a level of regret around the things I can't and now won't be able to do in my life.  I have a definite sense that time is short.  Achieving greater self acceptance and peace around my own personal triumphs and defeats throughout a life with migraine is, I think, the most important task for me now.




Thursday, April 7, 2016

SpringTMS


New in January 2016

This new "machine" is a portable, single-pulse Transcranial Magnetic Stimulation (sTMS) device.
It has been approved by the FDA "for acute treatment of pain associated with migraine headache with aura."  From the manual, "The SpringTMS is intended for self-treatment and delivers a non-invasive, brief, single pulse of magnetic energy to the back of the head.  This creates a brief electrical current in the brain intended to stop or reduce the effects of migraine headaches."  These mild electrical currents excite and depolarize neurons in the brain.  They inhibit CSD or cortical spreading depression and thus have the potential to terminate aura and subsequent headache.
http://www.ncbi.nlm.nih.gov/pubmed/20553334

I have chronic migraine with aura, but my auras occur 1 to 4 x monthly while my headaches are a near daily occurrence.  While the FDA has approved the sTMS for migraine with aura only, some studies cite evidence that it is effective for migraine with and without aura.  

The sTMS became available for rent from eNeura Inc. by prescription in the U.S. in January of this year.  The cost is approximately $250.00 per month.  While I am in the process of applying for coverage from my insurance company, there is no guarantee they will agree to reimburse me.  Representatives from eNeura have been accessible and cooperative in working with me on reimbursement request.  The eNeura nurse/ patient representative is also readily available by phone to discuss the finer points of using the device and answer any questions that may arise.


Zapper

In consultation with my doctor, I've worked out a treatment regimen.  I use my zapper, as I call it, in the morning and in the evening for prevention.  I deliver 3 pulses each time.  When I have a headache, I give myself 3 consecutive treatments or pulses. If the headache doesn't go away in about 10 minutes, I repeat once or twice with another 3 pulses. I try to use the device as soon as I feel a headache coming on.

The treatment doesn't hurt.  You only hear and sort of feel a "thunk" inside the mechanism.

The sTMS was approved in Britain for use with patients with migraine with or without aura and became available in Jan. 2014, a year earlier than in the US.  Post market studies show optimal dosing for symptoms in the range of 10-12 pulses per treatment day.  http://thejournalofheadacheandpain.springeropen.com/articles/10.1186/s10194-015-0535-3

So far so good

I've now had my SpringTMS for three months so this is a preliminary report.

The good news: there is no doubt that it is aborting my headaches most of the time.  My headache journal supports this conclusion. When I do have a headache, I treat with the sTMS fairly quickly, and the headache usually goes away.  My use of abortive medication has decreased from 3 or 4 times a week to once or sometimes twice weekly.

I'm less sure whether or how much regular use of the device is acting to reduce the frequency of my headaches. This will become more obvious in the next few months.  I'll keep you posted!

On days when I use the SpringTMS multiple times to abort a major headache, I still sometimes feel the after effects including fatigue and depressed mood the next day, but I'm more or less functional and not in pain.  While my energy may be low, I can still do routine activities.  This is a huge difference.  I now feel like I can engage in activities that I wouldn't consider 2 months ago.  I am thinking about taking a writing workshop in June and an art class in July.  Since this requires not only sustained attention and tolerance for being around groups of people for hours at a time, but also tuition, I just haven't been willing to make this kind of commitment for a long time.

Traveling

In February we spent 10 days in Melaque, Mexico, a trip that had to be postponed in December because I was just feeling too lousy.  In spite of coming down with a Mexican cold, my headaches didn't spike and I was able to enjoy swimming, walking on the beach, sampling the food and practicing my Spanish.  I had no trouble traveling with my zapper although it kicked off the scanner as it went through security, and I had to step aside for a more thorough inspection.  Word to the wise:  keep it easily accessible in your carry-on luggage.  I did take the manual and my prescription with me as documentation; however, no one seemed concerned or asked for my papers.

Room with a view






Thursday, February 11, 2016

Gut Problems Feed Headache

The Fall

Both in terms of season and headaches.  In late September, early October, I was doing well.  I had some weeks of 4 headache-free days in a row, and I was feeling pretty good. Then something happened to my belly, and I've never been quite sure what caused it.
Rocky descent 

I went to the symphony with friends.  In the middle of the performance high in the nosebleed section of the balcony, my stomach began to hurt and I was suddenly tired and sleepy.  It was all I could do to keep my eyes open.  After the performance, I went home and crashed and didn't get off the couch for days.  I couldn't eat much.  I was nauseated, my stomach hurt and I had persistent diarrhea.  My digestive tract was in full scale revolt.  I assumed I just had a stomach bug and waited for it to go away.  Days turned into weeks which turned into months of nibbling at a bland diet and going to doctors.  I lost 15 pounds.  My headaches spiked to near daily events.  Not being able to eat normally was a knock-out punch.  I felt so lousy, weak and anxious that we had to cancel our December trip to Mexico.  My creative brain tanked.  I couldn't bring myself to write, draw or weave.

I had no fever, nor had I taken antibiotics recently, two diagnostic clues that might have indicated a serious infection.  All lab tests came back normal.

Winter heading towards spring

On December 1st, I went for my first visit with a new acupuncturist.  Slowly time, diet and her treatments helped me turn this thing around.  It bears mentioning here that I never let my acupuncturist put needles in my head.  I learned the hard way that it triggers a migraine.  Finally within the last 2-3 weeks, the severity level and the number of days between headaches have stretched out enough that I am out of rebound range in my use of abortives and rescue meds.  Now almost 3 months after this malady set in, my stomach and gut have decided to behave themselves, my anxiety is down, and my energy level up.

My family was together for Christmas when my son confirmed that he and his girlfriend were truly getting married soon (although they didn't yet know quite when) .  By the end of Jan., I was feeling good enough to go ahead and rebook our winter vacation to Mexico for mid Feb.  Of course, soon afterward, they sent out the evite for a May wedding in ........ Mexico.  Two trips is not a bad thing!  

Digestion and headache

So what happened?  It may have begun with a virus and what my gastroenterologist called post viral syndrome.  But I also had some stomach trouble off and on last summer, which leads me to consider other possibilities.  I am extremely sensitive or frankly intolerant to many medications.  One theory is that I can no longer tolerate one of my headache prevention meds.  My stomach was signaling me to reduce the dosage.  I do know that when my gut is happy, I have fewer headaches.  Conversely, when my digestion is messed up, my headaches become more frequent.

There's a lot of interest and research in western medicine right now on the subject of the gut micro biome.  It turns out that what goes on at the microscopic level, the bacteria we carry around in our intestinal tract, is implicated not only in diseases like diabetes, obesity, heart disease and inflammatory bowel disease, but also in rheumatoid arthritis, autism, alcoholism, multiple sclerosis and, yes, migraine.
http://journal.frontiersin.org/article/10.3389/fneur.2014.00241/full
http://www.ncbi.nlm.nih.gov/pubmed/25402818
 
The gut and your migraine brain communicate via the vagus nerve, endocrine and immune pathways. And the communication travels both ways, gut to brain as well as brain to gut.

What does all this mean in terms of what we put in our mouths to nourish ourselves and cure our ills?  Can we use this information to improve our health and reduce our headaches?  Well, the jury is obviously still out on this score, but here's what I do and why.

  • First I'm keeping my eye out for more information via current scientific studies and research.
  • I have quit taking isometheptene and I'm slowly weening myself off another of my meds under my doctor's watchful eye.
  • Whenever possible I avoid taking antibiotics, which strip your gut of helpful bacteria as well as the bad bugs they're designed to take out.  I have a primary care provider I like (an MD), as well as a naturopath who has prescriptive power in Washington State.  He often knows effective alternatives to antibiotics.  
  • Years ago, I had food allergy testing and the one and only thing that popped up was a clear intolerance to eggs borne out by the fact that they make me very constipated when I eat them.  So I don't.   
  • I take L-glutamine which also seems to help my gut.
  • I take probiotics and eat foods that supply prebiotics which, evidence suggests, help digestion and protect you from harmful bacteria.  http://www.mayoclinic.org/healthy-lifestyle/consumer-health/expert-answers/probiotics/faq-20058065
  • I take a tablespoon of ground flax seed daily.
  • I don't eat much prepared or packaged food, and when I do buy the odd bag of chips, package of crackers or boxed soup broth, I shop for the one that has the shortest list of ingredients, the one that leaves out the sugar, salt, thickening agents or preservatives.
  • I eat a lot of vegetables which, fortunately, I like.  My latest easy, tasty veggie is stir fried or steamed greens including kale, cabbage, beat greens, chard and spinach and more.  When my gut is behaving itself, I eat a lot of uncooked greens in salad too.

Here are a few tips from Dr. Christiane Northrup, a good source of information on ways to take care of yourself.  http://www.drnorthrup.com/how-to-improve-your-gut-microbiome-in-a-day/

And from Michael Pollan in his book, "In Defense of Food."  Pollan looks at American eating habits and what he calls the culture of eating in this country.  He comes up with some great, well-researched  guidelines that deserve our attention.

Thankfully, I can finally eat again with the best of them, including tacos and enchiladas, rice and beans as well as #3 spicy Thai.  I'm looking forward to eating whatever I feel like when we touch down next week in Melaque, Mexico.  My strategy for staying healthy in Mexico?  Lots of limes, garlic and mineral water as well as my regular dose of probiotics.  Avoid the street food, and choose restaurants that are busy turning over a lot of meals every day.

Hasta luego y buen provecho!


    

Saturday, February 6, 2016

Family News and migraine

What's goin' on 

Andrew and Jenny are doing a kitchen remodel.  There is lots of discussion around paint colors, what it will feel like to tear that wall out and open up the kitchen to the living room and just when this is all going to happen.  Since for us, this is a vacation to Santa Cruz, we ride our bikes, walk on the beach and talk about which route to take this time driving our van north towards home.  Book and movie recommendations are always a topic.  Friends Jacob and Sally are getting married and we're all invited to the wedding in Poulsbo, Washington.  Andrew and Jenny are getting married in May in Sayulita, Mexico.  The foundation of Ben and Leslie's new house has been poured.  The kids are coming over on Sunday.


Notice there is no discussion about headaches, neither my son Ben's nor mine.  This is almost always the case.  I don't usually talk much about all my head pain because while my life seems virtually consumed by it, I feel as if it's probably a bore for everyone else.  And in fact I'm bored with the topic myself.  This in spite of the fact that my headaches have become near daily events and Ben's have spiked recently.  He functions as a nurse with dull daily head pain which sometimes spikes to severe pain by the time he clocks out.  For both of us the pain pattern and frequency fluctuates with the season, stress level, ambient noise, whether or not we get a good night's sleep and more.  Of course sleep is at a premium for my son with a pre schooler and a toddler at home and a new house under construction.

When Ben and I are together with the kids busy playing, that's when we usually check in to see how the other guy is doing and offer up any new or interesting information we've come across.  Here's what's happening for me right now.

Mood

I'm in a pretty good place emotionally right now.  My mood usually tracks with my headache frequency and season of the year.  My headaches are currently less frequent thanks to recovery from recent illness and relatively new treatment options.  And while the February winter weather is oppressive, we're finally headed out for 10 days in Mexico starting next week. 

When my headaches are out of control and I can't do the things I like to do, I am downhearted and at least a little depressed.  It's hard for me to maintain a positive attitude, and against all logic, I struggle not to blame myself.  Self blame is quite common among those with chronic illness.  Articles abound on the internet about how frequent and counterproductive this is.  One of my favorite authors on the subject, Toni Bernhard writes about this negative emotion and how to get beyond it.  Find her blog, Turning Straw into Gold, at the address below. 
https://www.psychologytoday.com/blog/turning-straw-gold

Mid winter in the Pacific Northwest is wet, cold and gray.  The "monsoons" start in mid to late October.  The weather warms up in the spring, but the rain and gray skies often continue through June.  I usually do ok until after holidays.  Then I run out of patience, and my mood slides into the gutter like the rain on a wet day.  If I can stay active and engaged with friends and family, I do better.  But if I am flattened by headaches, my mood deteriorates.  I can tolerate one or the other, headaches or Northwest winter, but putting up with both is a killer.

Current Meds 

Preventatives:  Baclofen, klonopin, mirtazapine, zyprexa and CBD cannabis capsules
Abortives:  SpringTMS and naratriptan
Rescue:  Fioricet w/ codeine,  cannabis via vaporizer for pain, nausea and sleep
Sleep:  Zolpidem

I'm very fortunate that medical marijuana is legal in Washington, because nothing else except narcotics touches it for conquering pain and nausea while waiting for the abortives to work.  The downside is you can't travel legally out of the State with it, and I certainly can't take it to Mexico, our February escape destination.  In anticipation of traveling, I have spent the last two weeks weening myself off marijuana to see how I do.  Not bad, just less comfortable.  Poor sleep is actually the worst of it.

I spend hours nearly every week staying on top of any and all headache news that hits the national media, reading any peer reviewed scientific articles I can get my hands on, checking in on the blogs to make sure I'm not missing any new possibilities, learning more about diets that seem to be working for others, seeing specialists including, right now, my headache guy, an acupuncturist, and a mental health provider.  I log in hours every month or two haggling with my insurance company over medication coverage. While I share some of this information with my husband, much if it is filed away or filtered for personal use inside my own skull.  It's a world of feeling and information that tends to live within me alone.  Here's just a little bit of the latest 

Current and future possibilities

Spring TMS


This device involves transcranial magnetic stimulation to abort a headache.  It rents for $ 250.00/ month and will likely not be covered by the vast majority of insurance companies.  It just became available in late December.  I got mine 3 weeks ago.  It's early days, but the frequency of my harsher headaches is down, and I'm not using quite so much abortive medication.  www.eneura.com/tms.html

GammaCore

A device that delivers electrical stimulation to the vagus nerve in the neck - to abort or prevent a headache.  Available in Canada but not in the US even though this multinational company is headquartered in the US and FDA drug trials have taken place here.  It's a pricey little devil at approximately $ 475.00 (Canadian) for a limited number of doses.  Then you have to send it in for a recharge of the device, which no doubt will be accompanied by a monetary recharge as well.  There is no information on when this baby will be available in the U.S.     
http://seakaproducts.ca/product/gammacore-150-doses-cw-gel/

GammaCore

Migraine vaccine, CGRP Antagonists

This pharmaceutical is not really a vaccine but acts kind of like one.  There is a lot of excitement about the drug in medical circles.  For me, it's hard to get excited about a "solution" that is still undergoing FDA trials and is, at the very least, 3 years from market.  On the other hand, my son is holding onto the possibility that this new approach will solve his migraine problems.  Truthfully, at age 69, I just don't have that many years left, while he does.  Aging changes your perspective and the quality of your hope.

When it becomes available, either monthly or every 3 months or so your doctor will inject humanized antibody CGRP to prevent headaches.  So far, research looks promising, but it's a long wait if you're having near daily headaches.  There are FDA drug trials I'm looking into, but chances are that I won't meet the requirements.  For the most part, those over 65 don't qualify for a drug trials.
http://www.pacificrimheadache.com/news/2015/05/news-from-the-international-headache-congress/

Cefaly


The Cefaly is a (tens) transcutaneous electrical stimulation mini machine that targets the trigeminal nerve.  I bought my Cefaly in Canada where it is approved as both a preventative and abortive device.  Settings may be different for one prescribed and purchased in the U.S.
One push on the button of my Cephaly activates a 20 minute session that is designed to abort a migraine.  Push the button twice for a preventative session, three times for a relaxation session.  This device worked for me for a while, and then it was no longer effective as an abortive.  I gave it to my son who thinks it is helping to reduce intensity and frequency of his headaches.  Purchase price:  $349.00.  http://www.cefaly.us/en

Emsam transdermal patch

This medication is an MAO inhibitor, a drug for depression that has a long record of successful (for some) off-label use to prevent migraine.  It comes in pill form with an extensive list of dietary restrictions that are necessary to prevent serious drug/ food interactions.  The new patch doesn't have these restrictions.  Available now.  Pricey at $1200.00 per month.  My insurance would pay half, so at 
$ 600.00 per month, I haven't leaped up to try this.  Neither have I crossed it off my list entirely.  When I told my family about the patch and the price, my sons offered to help with the payments.

Sphenocath 

This procedure involves threading a catheter (no needle) up your nose (waaaay up) to access a ganglion leading to the trigeminal nerve.  When on target, the doctor injects the anesthetic marcaine.  Repeat 2 or 3 times and you may get some lasting relief.  I tried this, and it made things worse giving me a nasty sinus-like headache which was minimally responsive to my usual abortive medication.  No repeats for me.

Medication

I am really at the end of the long list of medications that act to prevent migraines.  Due to age and genetics, I tend to have exaggerated side effects and poor response to many pharmaceuticals.

Alternative treatments

While I'm always open to new ideas, the most common so called alternative treatments have had no impact on the frequency and severity of my headaches.  These include massage, physical therapy, acupuncture and Chinese medicine, chiropractic and naturopathic treatment, biofeedback, cognitive behavioral therapy, herbs and supplements, essential oils and the migraine diet.  Massage feels good;  acupuncture helped with carpal tunnel and digestive issues; biofeedback has helped with relaxation and gut problems; physical therapy exercises are healing long-term achilles tendonitis and yoga helps me to feel better overall.  None has touched the headaches.  I continue to see a mental health counselor to help me cope with chronic pain and stay open and curious about new ideas and approaches.

Last spring I began meditating, which does seem to reduce the severity of pain on some days.  This little chink in the brick wall of head pain is significant, so I continue to explore this path.  In the 1970's Jon Kabat-Zinn, a Buddhist monk working with others at the University of Massachusetts Medical Center, developed  an 8-week course for those with chronic pain.  Since then it has morphed from one class to a mindfulness movement.  Last summer I took the class, Mindfulness-based Stress Reduction, which borrows from the traditions and practices of Buddhism, yoga and progressive relaxation using meditation, breathing, movement and stretching.  http://www.umassmed.edu/cfm/stress-reduction/history-of-mbsr/